From AVRF President, Stella Pavlides
Here in the United States, individuals with vitiligo live with pointing, staring, questions, ugly comments, and sometimes even bullying. In Kenya, there is an even greater stigmatism associated with this disease. There, vitiligo is viewed as AIDS, a curse, or cancer. Many of our fellow brothers and sisters living with vitiligo are not accepted by society. They are cast out and sometimes physically abused. This is due to lack of education and awareness.
When I learned this, I decided I needed to go to Nairobi, Kenya to see firsthand what those living with vitiligo endure on a daily basis. In 2005, I went to Africa for the first time. Once there, I met Francis Ndungo who heads the Nairobi Chapter of the AVRF. Francis invited quite a few people to join us for an informal get together at the Holiday Inn. After a little while, the attendees began to relax and started to share stories about how difficult living with vitiligo in Kenya is for them. The AVRF was honored to be able to provide lunch for the attendees during this get-together.
I went home to Clearwater, Florida and shared my Kenyan experience with the AVRF board of directors. However, the Kenyan visit, talks with vitiligo patients, and a donated lunch didn’t seem like enough. I felt a yearning and obligation for the AVRF to do more for our new Kenyan friends. As Francis and I continued to communicate, I learned that Kenyatta National Hospital did not have treatment equipment for vitiligo and would be the perfect place for us to donate a narrowband UVB unit. This could be used to help patients treat their vitiligo.
Through Francis, I was able to make contact with Dr. Peninah Kitili, who was at that time the head of dermatology at Kenyatta National Hospital. We corresponded quite a bit, and she too informed me how much a narrowband unit would help. I presented this idea to the board of directors. The vote was unanimously in favor of gifting a UVB unit to the hospital.
In the meantime in 2007, I returned to Kenya where I met with Dr. Kitili and her staff as well as with some of her vitiligo patients. Words cannot express how much their need touched my heart. Upon my return to the United States, we began mission in earnest. The AVRF is a small, yet powerful charity and by the end of 2007 had raised enough money to purchase a narrowband UVB unit and have it shipped to the Kenyatta National Hospital in Nairobi.
Later, in 2009, I returned to Kenya with Professor Karin U. Schallreuter, MD. Dr. Schallreuter graciously educated hospital staff in the proper use of the narrowband UVB unit. During our time there, we also distributed some “Build-A-Bear”® Teddy bears to the children in the cancer ward. This was made possible through the “Paying it Forward” program of the AVRF. Through this program, children of the AVRF donate gifts to other children who are less fortunate. Words cannot express how excited the little children were about the bears. It was very obvious that our gift was truly appreciated by each and every one of them.
My dream is to return to Kenya to continue changing the lives of those living with vitiligo by educating the public. I hope and believe someone who sees the worth of this mission will be able to help fund the trip. I also look forward to getting additional help in creating an educational Public Service Announcement and informational vitiligo brochures produced in the Swahili language. Please don’t hesitate to contact me if you are able to help in any way.
Following are some pictures from our time in Kenya.